Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Friday, September 20, 2013

The FDA has approved Dr. Kaspar's Gene Therapy program! We would like to say thank you to Dr. Kaspar and his team at Nationwide Children's Hospital, along with Sophia's Cure Foundation and numerous other families of children with SMA for working vigorously towards making this day become a reality.

We would also like to thank everyone who followed and supported Avery and donated to Dr. Kaspar's Gene Therapy program. We hope you'll take a few minutes today or this weekend to celebrate this accomplishment while continuing to spread awareness about SMA!

Lastly and most importantly in our humbly biased opinion, we would like to give special thanks to our amazing daughter Avery for inspiring us and countless others. We ever so dearly love you and we will forever miss you.

We will finish this post with an adorable and amazing video from the Gaynor family (Founders of the Sophia's Cure Foundation) announcing the FDA's approval.

Even though Avery is no longer physically with us, please don't forget there's plenty of children and others living with SMA, so please share Avery's story by forwarding her message to your friends & family members! The more people who are aware of SMA, the less likely future children will be diagnosed with SMA!